Last January I wrote several posts about my husband’s brain cancer. Things seemed to be going well enough.

Unfortunately, in late March, his MRI showed some re-growth. He was, statistically, pretty much average for the number of months one with Glioblastoma undergoing the Optune treatment lives without a recurrence.

So we sought out a very experienced surgeon in Oklahoma City to discuss surgery. Dr. Michael Sughrue is a neurosurgeon experienced with Awake Brain Surgery. He and his team of physical and speech therapists were able to assess his speech and hand activity during surgery in order to minimize the effects of surgery on those brain functions.

I imagine I will post more about our experiences during this time in the future, but that is not the purpose of this post.

18:18

This post is to record that my husband’s incision from that second brain surgery became infected about two weeks post-op. So if you are reading this and wondering how he is doing, I am sorry to report that his body could not fight that infection. He was declared brain dead at 18:18 on April 20. I intended to go into more detail about this experience in this post, but I find that I am not quite ready.

I moved about a month ago in order to be closer to my parents, closer to my kids’ schools and to give each kid their own room. To give us a bit more breathing room as we grieve. To give us a bit of space from the memories at our old house.

Every day when I walked through the front door of the old house, I remembered coming home and seeing him throwing up on the front porch the day before he died. Part of my mind started to drift to the ambulance ride and the ED visit. The stay in ICU. I just can’t dwell there every single day.

Work and Workouts

Next week, I am reducing my hours at work again. I will be taking some time to unpack at the new house. Taking some time to get my paperwork caught up and filed away.

I am also moving my workouts from the evening time to the day time. My 3 year old has developed some anxiety when I leave the house at night.

“Are you leaving, Mommy?” he asks me every night now. So now I can start to reassure him that, no, I am not leaving tonight. I have to keep working out though. It is kind of a mental health thing. The endorphins really help me keep from feeling down. So now I’ll just workout during the day.

I’ll take more naps. and when I’ve got that routine in place, I’ll start writing more blog posts. I have grand ambitions of creating a following here. Creating some opportunities here. My day job doesn’t quite fulfill me the way that it used to. So we’ll see what blogging does for me.

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As a fourth time mom, I sometime get asked for what you really need for your baby’s first year. In this post I am going to expand on a list created by Janet Lansbury into a baby essentials checklist with links to the products I actually have and use as a 4x mom.

I also included a few short lists at the bottom of things you “might want” and things you just “don’t need”.

If you have any suggestions or questions, please leave them in the comment section below.

This post contains affiliate links. That means if you click on a link to a product, I may receive, at no extra cost to you, a small commission when you make a purchase. Thank you for your support.

Baby Essentials Checklist

There are enough things on this list that I broke them down into 7 categories.

Sleeping

Babies spend a lot of time sleeping. I bed-share, so we don’t use our crib. If you aren’t sure if bed-sharing is for you or cannot follow all of the rules for co-sleeping safely, you will want a crib.

Clothing

I prefer the kind with snaps, because the ones with zippers only go down one leg and are hard to change diapers in. Some people prefer the zippers, so I recommend starting with a few of each and seeing which you prefer before you buy very many.

3 Blankets

baby jackets are a pain since they can’t wear them in the car seat, so just get some blankets. My kids liked different fabrics as infants. One liked flannel, one fleece and two muslin.

Out and About

I never enjoyed lugging around the infant bucket seat. It was heavy and hurt my back. A good convertible car seat will last from newborn to age 6 or 7 when you can put them in a booster.

Janet Lansbury dislikes baby carriers. I understand her point of view, but I don’t use my carrier in the ways she objects to. I don’t use mine to involve baby in what I am doing. Actually, I rarely use mine in the house. I use it to and from the car, at the grocery store, or at church. Anytime I would otherwise already be carrying or holding baby.

Especially toys with batteries. Seriously. Babies can entertain themselves with a everyday stuff around the house pretty much endlessly if you let them. The less active the toy, the more active (read self-entertaining) the baby.

When you or a loved one is diagnosed with brain cancer, especially an aggressive one like Glioblastoma, one of the first questions that run through your mind is about glioblastoma life expectancy.

Given that my husband, Kraston, was a strong, otherwise healthy, young 33 year old man when he was diagnosed, his doctors did not give us a ‘prognosis’ or life expectancy. So being the curious researcher that I am, I set out to review all of the statistics available to determine what we should expect.

Life Expectancy Without Treatment

Without treatment of any kind, the typical glioblastoma life expectancy is generally accepted to be around 3 months. This is generally for people who have inoperable tumors and are too sick to undergo radiation or chemo. Luckily, Kraston’s tumor was operable and he was healthy and strong enough that he had few side effects from radiation or chemo.

Life Expectancy with Treatment

Life expectancy with for a cancer patient seems to be defined as “median survival time since diagnosis”, or the amount of time that 50% of patients survive after diagnosis. Median survival time is usually measured in months for glioblastoma.

Another way many resources measure life expectancy is as a percentage of people who live to an indicated number of years.

The number of months of survival time varies somewhat depending on how old the data is. Many websites still state a life expectancy of 12-15 months, but median survival time seems to have improved over the last ten years.

Data From American Brain Tumor Association

Glioblastoma Life Expectancy

It has been 8 months today since Kraston was diagnosed. As noted above, he hasn’t been given any specific prognosis. He had a stable (unchanged) MRI last week and is currently feeling good. So we will keep trucking along until something changes.

Statistically 99% of glioblastoma patients have a recurrence (aka progression, aka starts growing again and causing symptoms). I’ll probably do an analysis of the statistics for “progression free” time soon, but initial information from the indicates an average of 7 months progression free time since completion of radiation.

We are coming up on 6 months since radiation, so my prayer is that his tumor will wait as long as possible before it starts to grow again.

As the wife of a Glioblastoma survivor of only 8 months (so far), I am curious how this disease affects people’s lives. Since Survival With Kids is slowly morphing into a blog about Glioblastoma (at least for now), I thought I would research other blogs written by Glioblastoma survivors and/or their spouses.

Below is my compilation of both the active and inactive blogs that I have found so far. If you know of any others, please leave me a comment with a link to their blog and I will add them to this list.

Active Glioblastoma Survivor Blogs

These are active / websites blogs. The person with Glioblastoma is still alive and either they or their spouse are providing updates on a regular basis.

Jennifer Parry

Inactive Glioblastoma Survivor Blogs

These websites / blogs were active for some time but are inactive. Most explicitly state that they are inactive now due to the one with Glioblastoma passing on, but some seem to have just petered out. They all provide insight about their journey with this disease.

When my husband was first diagnosed, many people recommended a glioblastoma clinical trial at Duke University involving the polio vaccine. Unfortunately, upon further review, I determined that it wasn’t available to newly diagnosed glioblastoma patients. You can read more about our early treatment decisions here.

It hasn’t happened yet, but statistically my husband, Kraston, is getting close to having his first recurrence. If this happens, I want to be ready with our next move. I am strongly considering a glioblastoma clinical trial, but there are a lot of choices. Which is good for future glioblastoma patients and a future cure, but makes it tough to figure out what might be a good fit for us right now.

So this post explores the process that I am using to narrow down our options. If you are a glioblastoma patient or a fellow caregiver, you can use this process if you are searching for a glioblastoma clinical trial.

What Is The First Step?

Can You Narrow Down The Location?

Much of the research on glioblastoma seems to be happening on the coasts. So if you live on either coast, you will have a lot of great options without a huge travel time. Unfortunately, we live in Tulsa, Oklahoma making it somewhat onerous to travel to the trials in California, North Carolina or Massachusetts (those which seem to have gotten the most press this past year).

My husband and I have 4 kids under the age of 8, one of which is an infant, so traveling very far away for very long is unappealing. We don’t want to waste days traveling for a trial that could only add days to his overall survival. Depending on your situation, you may have a different tolerance for travel.

The Tulsa International Airport offers nonstop flights to 17 different cities in the US. So I went through that list of cities to eliminate those which involved more than 2 hours of travel time. I’ve narrowed it down to the following 5 cities which offer a glioblastoma clinical trial:

Dallas

70 minute nonstop flight

Denver

110 minute nonstop flight

Houston

90 minute nonstop flight

Oklahoma City

90 minute drive

St. Louis

70 minute nonstop flight

These cities span 4 states and the advanced search on ClinicalTrials.gov only allows you to include up to three different different states. I checked all of the studies available in Denver and they were also offered in one of the closer cities, so adding Missouri, Texas and Oklahoma as search criteria reduces the number of results to 43 studies.

Can You Narrow Down By Phase?

Clinical trials can be classified as one of 5 different phases. Only 4 of our 43 at this point are Phase 3. These are the studies that have shown promise in their phase 1 and phase 2 trials. In our opinion, the downside of a Phase 3 trial is that there are multiple arms to the study where some percentage of the participants don’t get the experimental drug, they just get standard treatment. If we are going to do the standard treatment, we’d rather just do it in Tulsa.

So I am going to reduce my search to just phase 1 or 2, giving 34 results. At this point, I have pretty well exhausted all of the online search modifications that I was sure about. Below is a summary of my final search criteria:

Glioblastoma

Recruiting

Interventional Studies

United States, Missouri

United States, Oklahoma

United States, Texas

34 years

Phase 1, 2

What is Next?

Now that I have reduced the list as best I can online, I downloaded a spreadsheet of the results to see how I can further reduce the list. When you download a spreadsheet, make sure you select all available fields so you get the most amount of information to analyze.

Looking at the information in the spreadsheet, I found one easy things to do a word find on. I am looking for clinical trials for after he has a recurrence, so I searched for “Newly Diagnosed” and eliminated those trials from my list. If you are looking for newly diagnosed trials, then you can search for “recurrent” and eliminate trials for which you would not yet qualify. Eliminating (4) “newly diagnosed” trials still leaves us with 30 options.

What Else Do You Look For?

This is where the process gets more personalized and subjective. I opened up each trial on the list and read through the information to find things which could eliminate a few more trials from my list. I edited the list down to 15 by looking for the following:

Locations that were not yet recruiting in my preferred cities, despite recruiting elsewhere. The online search tool doesn’t make this distinction.

Locations in Texas that weren’t in Dallas or Houston. There are a fair amount in San Antonio.

Trials that had an “active comparator” arm, similar to the phase 3 trials. If there is a chance that he would be randomized to just the standard treatment, we’d just rather not take the time away from the kids. Depending on your financial situation, you might be okay with the possibility of the standard treatment within a trial environment. Most trials pay for the majority of your treatment costs.

Studies with a maximum amount of dexamethasone less than Kraston’s occasional 4mg dose. If you are taking steriods, you will want to check the maximum amount allowed by the study.

Studies which say they are only to be used as a last resort. Several said to do the standard treatment first, so I’m guessing they are risky and probably not a great option yet. Kraston is still doing pretty well.

Researcher and Hospital reputation. I googled each of the hospitals and looked for their reviews as a cancer treatment facilities. Some trials list the primary investigator and you can google those names as well to read reviews of the researcher/doctors involved.

So Which Glioblastoma Clinical Trial Will You Do?

I can’t answer that yet. I have narrowed it down to 15 studies, reflecting the following 5 different researchers/hospitals:

University of Oklahoma, OKC

Texas Oncology (multiple locations in D/FW area)

Washington University (St. Louis)

Research Facility (St. Louis)

MD Anderson (Houston)

At this point, I have narrowed down the options far enough, that it is time to start reaching out and making contact with these organizations. Some of the trials have pretty length medical requirements that I am unable to determine for sure if my husband would be eligible.

Are you, or one of your loved ones, involved in a glioblastoma clinical trial? If so, leave a comment below with your experiences about how you/they decided which trial to participate in.

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